What experiences do we share, and what barriers confront us? Is it possible to replace our contemporary, medicalized culture with something more representative of us as complete beings? Are we ready for a real sense of community yet?
I think so.

February 21, 2007

Guilt connects deep inside of us at that vague junction between an action taken and an action withheld. A core understanding of E. is the recognition that as persons with it, we cannot control the actions of our seizures with certainty. Epileptics and their families learn how to keep silent about the condition, preferring not to speak too loudly about it because to do so might engender more problems than support. In that silence we quietly learn to devalue ourselves. We learn to be guilty.

There is little social history we can lean on to make us feel more comfortable. We can become fixed on our own relationship to epilepsy and can spend huge amounts of time and energy on it. Rarely have any of us seen ourselves seize, but many of us have experienced the aftermath of a seizure’s power and the residual effect it can have on those around us.

In relationships, we suspect we are burdensome, or that we create trouble just by being in the company of people. We go to doctors, we search out well-known epilepsy lobbying sites on the internet, and we read the statistics for diminished marriage rates among persons with E…

These data make it seem that persons with E. are less-than-desirable partners. When we wonder about the future and if we will be able to enjoy the finer things life has to offer: love, marriage, etc., we feel as if we are engaging in a fantasy. This becomes especially true once we become familiar with the statistics on quality of life issues.

Love might seem destined to elude us, but guilt never seems to.

Guilt is an intransigent emotional artifact of my own upbringing. I can’t seem to shake the need to say, “I’m sorry”. Even now, as a married woman with E., I find myself blurting out this phrase, or reacting as though I have done something to be ashamed of, even though I have done nothing. Because he loves me and accepts my E. as a feature of our daily life, I have come to realize that my “guilt” is a learned response.

I have, in the depths of post-ictal depression, said that my husband might be better off without me. But I have been shocked to discover this response was neither original nor solely my own. It comes from the mouths of others with E., as well:

“I have had epilepsy for…years and have sometimes felt my spouse would be better off without me....”

“(My husband) told me today that he is not happy and doesn't think our marriage will last. He thinks I will be better off without him…”

“…doing a lot of thinking about whether this relationship was good for either one of us…maybe she’d just be better off without me…”

We know, but can do nothing about, the odd components that are a part of the E. experience: medication side effects, behavioral problems that come before, during or after a seizure, depression, etc.

In the physical world, support systems for E. are fragmented and far-flung. Since the 1990’s, the web has become a kind of support system, because in cyberia, one may find some relief among peers.

Via list serves, blogs, chat rooms, and email exchanges we have discovered a way out of isolation. We have discovered a means with which to write future social history for ourselves. And perhaps a way to learn to value ourselves for who we are, without the guilt.

February 10, 2007

People have been sharing the names and stories of the disability heroes of E. all my life. It is always hoped by family, teachers and others that the person with E. will come to feel stronger and more capable knowing about them. These famous and historical persons with epilepsy are supposed to act as role models for one's personal success.

For my own part, I can't say I feel better about myself knowing there have been famous or historical persons with E., but I do find reading about them as interesting as their works.

Of the ancients, Julius Caesar and Socrates are presented most frequently. Napoleon Bonaparte is often pointed out, but unfortunately, the only lesson I took away from Napoleon's story was that his E. betrayed him in the end, at Waterloo.

I liked writers with E. much better.Fyodor Dostoevsky filled my adolescent hours with great drama;

Edgar Allen Poe, entertained me with horror stories;

Count Leo Tolstoy made me cry.

If I read Alice in Wonderland or Alice Through the Looking Glass with the understanding that Carroll shared Temporal Lobe Epilepsy with Dostoevsky and me, I might have been more patient. (I never really felt 'at home' with Alice, either in Wonderland or Through the Looking Glass). The reasons for my discomfort with his tales of Alice's journeys had everything to do with my own recognition of the seizure process in myself. When I learned recently about Carroll's temporal lobe E., I became more comfortable with him. Never certain why he shaped Alice's world the way he did, it makes sense to me now.

Dr. Steven Schacter says Carroll describes "perfectly" the sensation many temporal lobe epileptics experience when he wrote about Alice's fall down the rabbit hole. I wasn't aware of Dr. Schacter's personal experience with E., temporal lobe or otherwise, but I'll keep it in mind the next time I take that same trip.

Mentioning famous and historical persons is supposed to bolster the idea that one can become whatever one chooses to become. A disabling condition, such as E., should not be the damper to an individual's future as a human being or a citizen.

It might also be relevant to point out that these same lists of disability heroes are just as much for the encouragement of parents and caregivers. They act to stave off a creeping sense of failure and despair one can feel toward a condition such as E.. Disability heroes are encouraging for each of us, so it should come as no real surprise to note that at many disability web sites, you can find seemingly endless lists of them.

But the presentation of a disability hero makes some of us wonder about his opposite. To discover the opposite dimension of the disability hero is to find the disabled self-loather. The search is like turning over some kind of rock to find a nest of untouchable, slimy beings. It is an unexpected discovery.

The self-loather is one who hates himself utterly and those like him. This creature strives as mightily as the disabled hero strives, to make known his agenda. There are self-loathers in families: the ones who make life more difficult than it needs to be for their epileptic off-spring. No one ever hears about these folks.Harry H. Laughlin was an Epileptic Self-Loather.

According to Alex Wellerstein:

Harry Hamilton Laughlin (1880-1943) was the director of the Eugenics Record Office at Cold Spring Harbor, New York, from its founding in 1910 to its closing in 1939, and one of the most influential advocates of eugenics in the United States in the twentieth century. Aside from his work on immigration, which helped lead to the passing of the Immigration Restriction Act of 1924, Laughlin was also an influential developer of U.S. compulsory sterilization policy.

Laughlin published a copy of his "Model Eugenical Sterilization Law" as a template, which was carefully crafted to be both constitutional and heavily used by the legislatures. One state law derived from this model was passed by Virginia in 1924, then found constitutional by the U.S. Supreme Court in Buck v. Bell, 1927.

Buck v. Bell opened the floodgates for state lawmakers: its effect on society was to increase both the passage of sterilization laws and the practice of eugenical sterilization in the United States that would last through the period of World War II and beyond (http://www.people.fas.harvard.edu/).

Laughlin's ideas about compulsory sterilization were specific, listing the classes of persons to whom the law should be applied. One class specified in Laughlin's model law were epileptics. Harry Hamilton Laughlin was an epileptic, suitable for sterilization under his own law.

Harry Laughlin worked really hard to separate himself from the rest---wonder what all of that diligence and intellect could have done if he had simply chosen a more heroic path?